Friday, September 12, 2008

Congenital Diaphragmatic Hernia


So here is my Darling Boy. He had the stomach flu and just didn't stop vomiting. So I took him into the pediatrician and saw a new woman (only appointment we could get, but she is seriously awesome I may switch to her permanently), and she recommended admitting him for IV fluids. He was so dehydrated that it took 7 tries (7 TRIES!) to get the IV in. During the 6th try they were holding his arms and legs down but one of the nurses had her arm close to his mouth and he reached up and bit her. BIT HER! He decided that if his teeth were the only part he could control and use to defend himself, then by God he was going to use it! Such a spunky boy! Thankfully it didn't break the skin. They took a chest x-ray. After asking about it, they finally said the doctor would come in to discuss it with us. The x-ray showed he had a Congenital Diaphragmatic Hernia on the right side. From birth there has been a hole in his diaphragm and his abdominal organs have been able to travel into his chest. It is a life threatening condition that is caused by a congenital defect which develops during the 7th to 10th weeks of gestation and survival is 80% with modern medicine. (Which means there's a 20% mortality rate, don't think I didn't see that!) What happens is that two "flaps" of the diaphragm don't grow together properly, leaving a hole, usually on the left side. This is often found during ultrasounds or diagnosed within days of birth. With Jamie, his ultrasounds looked normal, and he was very healthy and growing normally until recently and so there was no suspicion of a defect. They think that when he got the stomach flu, the pressure of vomiting pushed the organs up farther making it obvious in x-ray. Anyway, they then flew him to Riley Children's Hospital in Indianapolis by MedFlight helicopter so they could have time to stabilize him for surgery. We followed him by car, arriving 3 hours after he did. Surgery began at 8am and by 11am they had finished. So that was the faster end of the spectrum. I don't think I've ever cried so hard from relief in my entire life. Mama and Michael had to tell people I was crying happy tears. I guess I sounded rather devastated, which I was just from the whole "I could lose him" fear. They had no complications, no bleeding issues (no transfusion), the organs looked pretty good, the lungs looked better than expected, the diaphragm had enough of it's own tissue that they were able to just sew it up without adding anything to cover the hole. The liver, colon, appendix, lower intestine, part of the upper intestine, part of the stomach, and part of one kidney were all in the chest cavity. The lung that was compressed the most was partially collapsed. I don't know how much of it was working vs. filled with fluid. The chest tube is still in and the fluid is draining out. There is a bruise on the lower intestine, but it didn't look bad enough to remove, so the doctor just left it to see if it will repair on it's own. After the surgery, the lungs and heart had moved to fill 75% of the chest cavity, which is apparently super wonderful since sometimes the "squish" is permanent. His lungs don't seem to be underdeveloped, which is again amazing given the condition. They are giving him calories via the central line to help him gain weight and stay strong since he already lost weight and hadn't eaten in so long. Okay, he'd eaten, he'd just not digested. Small difference, I know. He is now on morphine every 3 hours. Every 4 was too far apart. His fluid output isn't matching input, which is probably him building up some lost fluids. His urine looks much better than before surgery, but it's still a bit cloudy, so we'll see what the doc says here soon. A lot of people have been praying for my darling, so please continue praying. I know it's greedy of me, but I still want as many miracles for his recovery as I can get. He is a brave wonderful strong courageous boy. We need him.

2 comments:

Darcy said...

Hi there,
I just found your blog today. I have a google alert set up for when congenital diaphragmatic hernia is posted on the web...
My son Owen had right-sided CDH that was diagnosed at 33 weeks gestation. He is doing great now.
I am amazed at the story of your son. As you say he is obviously spunky and quite a fighter to have gone undiagnosed for so long. What a trooper he is!
I wish you luck and send prayers for a complete recovery. Be greedy...take all the miracles that you can get!
darcy
http://ittybittyblog.wordpress.com/

Unknown said...

Hernia Repair Complications

A hernia repair is a quick procedure. Provided all goes well, he should be in and out of the hospital in one day.